Thursday, September 23, 2010

A Bump in the Road

I'm unhappy to report that I had to spend the last 5 days in the hospital. After undergoing a spinal injection of methotrexate as an experimental treatment to stop the progression of my disease, I developed aseptic meningitis. This is a non-infectious form of meningitis caused by my body's reaction to either the drug itself or one of the chemicals used to stabilize it. Basically my immune system went on the attack causing massive inflammation to the lining of my brain and spinal cord, resulting in high fever, headache and extreme weakness.
Although I'm now home and feeling somewhat better, I'm still running a fever and I'm not sure how long this will continue. As soon as I'm up to it, I'll be back to my usual shenanigans. Until then I hope that all of the people who have commented on my previous post or have sent emails will understand the delayed response.
Thanks to my dear wife Karen for her support throughout this mess, and who's fingers are typing this post.
A full account of all of this (including incredibly inept nursing and an extremely colorful roommate) as soon as I'm up to it.

I hope you are on a swift road to recovery. I also wanted to let you know that I used your "MS is a thief" line from your Grand Larceny post as the beginning line of my haiku today. I posted a link to your blog in my acknowledgement. Get well soon. Judy

Hi Marc,This is the first I've stopped by and read about your latest complications...I'm so sorry...I will be holding you in my prayers.

May you feel safe.May you feel happy.May you feel strong.May you live with ease.

I know this metta meditation might seem ridiculous in light of what you are experiencing...but notice I said feel...this is a wish for an internal/emotional healing process. It helps me tremendously to say these words to myself, for myself and then for others. I don't know why it works, but it comforts me. I hope it will be so for you too.

I just found your website yesterday while doing MS research (I had never heard of CCSVI, friend with MS told me about it). Anyway, I'm embarrassed to say I spent much more time than I should have at work reading it, and look forward to following you and your shenanigans from now on. In addition to being eloquent AND down to earth (not always easy to do) you're obviously a very special person. Hope you're feeling better and back on the road very soon. I'm holding you in the light...Julia

Marc & KarenMy prayers and thoughts are with you. You have been so helpful for me. Being newly diagnosed (April/10), you have provided me with information as well as the human side of MS. You are an inspiration. Karen is the true meaning of a hero. A bump or a bend in the road is just part of the journey, and you have graciously let us, your readers, in to be a part of your journey. Thank You,Prayers and love sent your way, always.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...